genetic testing of embryos

Back in January, in one of my very first posts, I wrote about being a Rebel in a Bathtub, describing all the taboo ways I exercise my freedom after a failed cycle. Shortly after writing that post I began to feel old and desperate, overwhelmed by the sound of a ticking clock in my brain, and I decided it would be wise to start following the rules again, which I have pretty much stuck to the last few months. I haven’t exactly been a t-totaller, but I have limited my alcohol, eaten healthy, moderated exercise, and popped hundreds of supplements. I had only three glasses of wine when I learned of Blob’s demise and only 9 total over the course of two months preparing for our last failed cycle.

All that effort at purity and perfection came to a halt last night when I accidentally had way to much to drink which also led to other choices that are not too great for my upcoming cycle like eating gluten. Actually, I didn’t just eat gluten, that would be understating it. Rather, I had gluten with a side of gluten and a little gluten sprinkled on top for good measure. There is more that I did and shouldn’t have, but not that I can put in writing for the fear of losing my low insurance rates.

Today I awoke in a haze and when the memories came rushing back I instantly began hating myself and my youngest sister for the influence that inspired my bad choices. I belly ached to my husband, sharing my self loathing, and also posted to my favorite fertility board about my transgressions. My IVF pals and husband all said the same thing, one night of bad choices is not going to lead to a failed cycle and it might even be good for me. I am human after all and loads of women get pregnant every day in much worse condition.

They are probably right. At least that is what I am choosing to believe. Besides, I can’t change it and its not as if stressing about whether I have destroyed good eggs is going to help me get pregnant. Better to move on and use my guilt for something good, like a run.

While I was punishing myself and trying to eliminate toxins on that run this morning, it occurred to me how ironic life is. There was a time many years ago that bad choices while under the influence might have led to, gasp, a pregnancy that we didn’t plan and didn’t want yet. Fast forward a decade and here I am hoping that the bad choices, which really weren’t all that bad, will keep me from getting pregnant.

Very funny life. Very funny.

And here is another really funny thing about life. It has a way of moving at the speed of light when you want to savor it, but gets stuck in molasses when you are looking forward to something. Tomorrow we meet with our new fertility doctor over Skype and it seems like time has come to a stand-still as I anxiously await his counsel. This is the first time I have ever experienced anxiety about a meeting because we have reached the point with my age and history that being turned down by a clinic is a real possibility. Bill thinks I am crazy, and that just like Celebrity Miracle clinic they will gladly take our money especially given the fact that we still produce so many eggs and conjured up three genetically normal embryos in our cycle late last year. Still after five fresh IVFs and 9 transfers they may advise us to move on to donor eggs. We will find out tomorrow, if tomorrow ever comes.

Image by rubyblossom via Flickr

Meanwhile, my daughter is far too rapidly making the transition from toddler to little girl. Today when I put her down for a nap she did not want to say “good night” to the owls painted on her bedroom door, our routine since she was born. She also did not want to give me “one more kiss and one more hug” like she always asks after I rub her back and sing her one song. She has become a master procrastinator and manipulator at nap time which only further demonstrates how un-baby-like she is. We couldn’t possibly be having any more fun but the arms on the clock measuring our time with her are whizzing around and around leaving memories of my baby in a beautiful but painful blur.

Very funny life. Very funny.

*I finally picked back up on reading the book “Writing Tools” and posting samples of my work on the Writing Tools page. Hence the extraordinarily long second sentence in this post. It has proven very difficult to keep up my work on writing skills while in the midst of IVF but now that we have entered a waiting period I hope to be able to work on it and add posts on most weekends.

It has been a busy, hectic, and emotional week. In fact we almost haven’t had time to process what happened last Friday.

Almost.

While I felt guilty in the moment, looking back I do not regret caving in the 11th hour and taking the home pregnancy test. Testing before the official test allowed us to leave early for our weekend of water sliding and cleared Friday night for much needed time to discuss the sad news and what would come next.

Our discussion that night was one of the most challenging in our marriage. Bill and I process bad news in different ways which often leads to disagreements during times when we should be most supportive of each other, like the night of a failed pregnancy test. Especially this failed pregnancy test.

After eight procedures, twenty embryos, one miscarriage, and putting all our hopes and money into the Celebrity Miracle Clinic for one full cycle, we were both reeling and not at all in a position to give to the other what was needed that night. The weight of a disappointment of that magnitude could crush even the most perfect of couples.

Because so much of the IVF process centers on me, it is easy for me to forget that we are both invested in this. We are both elated when we are at a peak and devastated when we are in a valley. I have often made the mistake of expecting Bill to be there to take care of me, to put me back together when I am falling apart, only to realize that he may not be whole himself. This was the case Friday night.

Adding fuel to the fire, we were not at all aligned with what we wanted to do next. I decided long ago we would go back to Celebrity Miracle Clinic for one more attempt at creating a baby with my own eggs. Who cares that we didn’t like our experience there? I reviewed statistics for the best clinics in the country and determined that Celebrity Miracle Clinic was the place to be for an old lady with egg quality issues who was serious about getting knocked up.

Bill, on the other hand, has a deep seeded dislike of Celebrity Miracle Clinic and suggested in a less than subtle way that we consider alternatives.

Cue massive, explosive argument.

Throwing a wrench into the recovery plans of a hormonal Type A infertile woman is bound to cause a wee bit of a problem. It was a long night. Hurtful things were said. The evening culminated in our holding each other at 2 AM seriously discussing whether or not we could go through IVF again at all.

In the physical world, some explosions are devastatingly destructive. Others are critical steps toward building something new and breathtaking, like an expansive tunnel to the other side of an enormous mountain. I feel that Friday night was creative destruction, the clearing of one set of ideas and mental debris that allowed us to find a new path through this huge obstacle in front of us.

The truth is I don’t care for Celebrity Miracle Clinic either. Take for example what happened Saturday. I went for my blood work at 6AM mountain time. At 12:41 PM a nurse from the clinic called me to see if I had done my blood work. I told her that I had. She was then supposed to call the lab and call me right back to give us the results. Five hours later, there was still no call and no results. I eventually called the after hours answering service and had to demand to speak to the on call nurse because I was told “lab results are only discussed during normal business hours.” After five phone calls I finally received a call back with the results of my long awaited pregnancy test.

This type of thing happens all the time at Celebrity Miracle Clinic, but I explain it away and suppress my feelings about it because they supposedly have the best lab and results in the country.

Bill’s suggestion that we consider going back to our old clinic, the one that gave us Spork, made me angry at first. But the more I thought about it, the more it made sense to me.

We initially went to Celebrity Miracle Clinic because we didn’t know if we were still making chromosomally normal embryos. While our old clinic can do genetic testing, they do it at an early embryonic stage that can damage the embryo to the degree that makes it less likely to survive and implant.

Celebrity Miracle Clinic uses technology that allows the embryo to be biopsied at a later stage and therefore does less damage to the embryo, using only a small number of cells from the part of the embryo that will become the placenta.

I debriefed with my Celebrity Miracle Doctor on Monday. He said that we had three genetically normal embryos that were of good quality and we were just “unlucky” this time.

Hmmm… maybe. Maybe it’s a little more than just bad luck.

In our cycle at Celebrity Miracle Clinic we had 5 embryos make it to the blastocyst stage. Of those five, the initial genetic test results came back with two embryos as genetically normal (euploid), one abnormal (aneuploid). The remaining two embryos had to be retested because the tests were inconclusive.

What? Retested? What does that mean?

That means Celebrity Miracle Clinic achieved a 40% failure rate on their amazing state-of-the-art testing and we had to do it again. After retesting, one embryo came back abnormal and the other embryo was Blob. In order to be retested he had to be warmed and biopsied a second time, removing even more cells from his 100 or so to support the test.

When Blob was frozen the first time he was a 5BA blastocyst which meant he was still in his shell. During the second biopsy he completely reanimated, expanded, and even shed his outer shell. Then he was flash frozen again.

After that he was never the same.

Embryos are supposed to fully expand after being warmed. In fact, re-expansion is the most important indicator for a successful implantation. Blob barely had a chance once he was warmed again and only slightly expanded.

What Blob looked like at transfer

What Blob should have looked like at transfer

Had the test worked the first time, or had Blob not been tested at all, he could be happily growing inside me. There is no way to know, but the testing could have been too much for him. It could have been too much for the other two normal embryos that didn’t implant in January as well.

My new/old clinic transfers embryos at an earlier stage, generally untested but also undamaged. Now that we know more than 25% of our embryos are likely to be chomosomally normal, we can go back to the new/old clinic and continue with some confidence that it will likely just be a matter of time and patience before one of those embryos sticks and becomes Spork’s sibling.

While we do run an increased risk of miscarrying an abnormal embryo that wouldn’t have been transferred at Celebrity Miracle Clinic, as well as an increased risk for Down’s Syndrome or other chromosomal issues, these risks aren’t higher than any other 38 year old who gets pregnant and are still relatively low. The trade off is that we put the embryos back to their natural environment without damage sooner, which bodes well for delicate embryos.

Armed with this knowledge, today we said goodbye to Celebrity Miracle Clinic. I sent the official form from new/old clinic requesting all my medical records. I called my nurse to tell her voice to voice. It felt a little like an overdue break-up, like severing a slightly dysfunctional but at one time mutually beneficial relationship that is no longer beneficial.

We said goodbye to more than just a clinic with that call today. At our first consultation with them back in July we were so filled with the hope we would wind up on the right side of their jaw-dropping statistics. We were mesmerized by their program and amazing facility. Today we are no longer awe-struck. We said goodbye to that child like wonder and the certainty that Celebrity Miracle Clinic would swoop in and fix what was wrong.

We also said goodbye to Blob today. Even though I knew at transfer he had a slim chance, I fully believed he would make it. The start of my period today underscored the fact that he did not, something I have known since Friday but becomes so real when this time comes, the time when a cycle officially comes to an end and a new one begins.

While a little saddened, we are also turning a page. I received a call with the plan from the new/old clinic today thus taking our first steps through the tunnel we blasted into our own personal mountain. While the pain of goodbye is still fresh if I dwell on it like the pain of a fresh break up, there is nothing like the promise of a new relationship to help the memory fade.

“Blob” as we are calling him (or her) is now resting peacefully at home, preparing to burrow into my lining and take root for the next nine months. It was a harrowing, exciting, and ultimately pleasant experience which began with our wondering whether we would be transferring Blob at all.

Blob’s First Baby Photo

Yesterday at the top of Breck’s Peak Six, I picked up a call from the clinic asking if I could come in right away for a cautionary ultrasound. It seemed the doctor was concerned about my cyst and the pain from the night before. Rather than blow our day of boarding we opted to arrive very early this morning to check on the status of my temperamental reproductive system. Until about 7:30 this morning we feared we would be coming home empty handed (or in this case empty “uterused”). Luckily the lining, ovaries, and vitals all checked out fine and we continued with the embryo transfer.

Our first hurdle overcome.

Next up was the transfer.

Because our ultrasound and lab appointments were at the break of day, we had time to kill before the 11:45 transfer. We spent it at Target where I picked up these groovy lucky socks. These socks were so perfect they jumped into my shopping cart and I was wearing them before we left the parking lot.

Ease of transfer is one of the many critical factors that lead to enhanced odds of success. A fundus (top of the uterus) touched by the catheter used to transport the embryo is a lousy precursor for implantation. Much effort goes into making sure the depth and shape of the uterus is understood before the procedure so the doctor can avoid the edges. It’s like that game of Operation we played as kids, except on a fuzzy black and white ultrasound screen with no buzzers to tell you when you screw up.

Image by Mykly Roeventine via Flickr

The doctor gracefully guided our little bundle of cells to the exact right spot without a single hiccup. Dr. S navigated Blob to the sweet spot with the precision of a fighter pilot landing on a aircraft carrier. What makes this feat more impressive is the embryo can barely be seen by the naked eye. Try landing that in a tiny little spot on a computer screen with only a bit of guidance from an ultrasound tech.

Way to go Dr. S.

Catheter releasing Blob in the perfect spot

Another hurdle overcome.

Blob was a busy little fellow this morning and hatched completely out of his shell prior to transfer, earning a final grade of 6BB. When the lab flash froze him after genetic testing back in January the embryologist graded him a 5BB. He’s overachieving already.

Blob’s incubator in the background

You may be wondering, what the heck do those letters and numbers mean?

Embryo grading is a complicated process, but essentially this means Blob was at stage 5 when he was frozen. This is the final blastocyst stage right before he hatches and burrows into the lining. The letters are grades for the inner cell mass (ICM) and the Trophectoderm Epithelium (TE). The ICM is a clump of cells that will eventually become a baby. The TE will grow into the placenta which will replace all the hormones I am taking between 7 and 10 weeks.

6BB is a good quality embryo. 6AA would be perfect. Both are fully capable of becoming future Rhodes Scholars.

Blob as a Rhodes Scholar

Typically an embryo reaches stage 6 on the fifth day after fertilization. Blob started slowly and took six days to get there. This is the main reason Dr. S gave Blob slightly lower odds than other genetically normal embryos. However, Day 6 blastocycsts like Blob fair much better with a frozen cycle like ours. This is due to the surprisingly short window in which the lining is receptive. Unlike in a fresh cycle, in a frozen cycle the doctor can control the timing of the lining receptivity and match it to Blob’s developmental stage, increasing the odds he will stick.

While our overachiever was quick to break out of his shell, he was slow to expand. If you have ever taken a balloon from a warm place out into really cold weather you know it shrivels up and loses its fullness until warmed again. Embryos are the same. They compact when frozen and then begin to expand when warmed. We are slightly concerned that Blob didn’t expand more prior to transfer, but encouraged that he is still developing. Most important, every last one of Blob’s cells survived the warming process.

A final hurdle overcome.

Post transfer I remained on bed rest for an hour before being wheeled to our car. We are now at the hotel where I will spend today and tomorrow at a 45 degree angle, able to rise only to powder my nose. Butler Bill enjoys this part of the process because it is the time he is most involved in IVF. I enjoy abusing my personal butler and make the most of being cared for by the love of my life at this sensitive stage.

If you look close enough you may be able to see Blob through those nostrils.

Butler Bill will bring me food, water, and medicine for two solid days. I will read, watch stand-up comedy, blog, goof off on the internet, meditate, and try not to obsess about possibilities. I am allowing myself only a half hour with Dr. Google to see what I can learn about slowly expanding embryos. After that half hour I am firing that negative jerk in order to relish being pregnant.

Pregnant.

In the IVF community we describe this part of the cycle as being PUPO (Pregnant Until Proven Otherwise). I am so done with the uncertainty implied by “until proven otherwise.” This mama has decided she is straight up knocked up. I plan to prove it on March 22nd.

The self-discovery I experience as a result of IVF never ceases. When I began this blog, I had every intention of posting something humorous about infertility every day. I vowed to readers I wouldn’t complain. I promised to not provide gory details of ultrasounds and other tests. And above all I promised no pity parties or rants. My goal was to bring a little levity to an otherwise heavy topic while also reminding myself to stay positive and laugh.

What was I thinking?

Positivity and humor are still great goals and I am not planning to dive head first off the deep end, but I am only on day two of estrogen and I am already throwing in the towel on trying to be funny every day. I don’t know how I forgot about the effects of that nasty lupron and estrogen cocktail. It’s like having a never-ending hang over. The headaches are constant and pounding. Fatigue has wracked my body. The moodiness is already wickedly bad.

The scary thing is that it is only just beginning. I am wearing only one estrogen patch at this stage in my cycle. By the time I fly out west to reunite with my long lost embryo I will be wearing four patches. Tears will be flowing and fights will be picked. I know myself and my body and its inevitable. Comedy writing on a daily basis is not in the cards.

You can already see the effects of the drugs in my writing. My posts have grown longer and just a wee bit darker as the injections have worn on and the patch was added. What I am learning is that there are just times when I am not a funny person. There are times when I barely feel like a person at all.

Freaking out and worrying are also tell tale signs of successful progression in an IVF cycle that are sure to make humor elusive. Yesterday I was convinced I hadn’t shed my old lining and that I shouldn’t start my patches until I did. I pleaded for an ultrasound to confirm that it was gone and I was getting a fresh start on developing fertile ground for implantation. As expected the ultrasound was fine. Despite the good news, I still dialed up my clinic twice today for no good reason to ask a couple of questions that don’t really need answers until March, if ever.

The questions were about the odds of success of our lone embryo. The doctor already told us the embryo had about a 35% chance of making it to a real life baby. But yesterday I spent some time with Dr. Google, never a good idea, and began wondering what factors went into the creation of that number. Did the doctor take into consideration that the embryo had to be thawed and retested because the first genetic test was inconclusive? What are the impacts of an extra thaw and biopsy on our delicate embryo? What are the odds that we will get all the way to our clinic and the embryo won’t survive the warming process?

I pestered my clinic with these questions even though I laid in bed late into the night last night reminding myself that the answers are irrelevant. The clinic has a 95% survival rate for thawed embryos. And even if the odds were lower, its not as if we aren’t going to go through with the transfer. What would this information change? Nothing good can come from this knowledge. I have already been meditating on the only statistics that matter, my very own 100% success rate. I visualize a SART data report with my name on it and in every column my results are 100%. Why would I want to mess with that image and its mojo by finding out what some doctor thinks?

One word, hormones. Hormones make the sane insane. They make the intelligent foolish. They make the happy sad. And above all else they make the confident worried. I don’t like worried.

Worry is a meditation on shit.

Worry and hormones aside, there is another reason that I am having troubling channeling my inner comedian.

The real self-discovery has been that its not only that I am not always capable of humor, I have also discovered that I want to try a variety of types of writing. I don’t just want to tell cute stories about IVF, I want to pour my heart and soul out on a page and see what it looks like in black and white. I want to hear my emotions and deepest thoughts roll of the tongue of the voice in my mind. I want the therapeutic jolt of liberation I feel when I hit publish on something I have created. The writing process won’t allow me to limit my life to one genre.

With all this in mind, I made a little change to the Laughter Through Tears subtitle today. Yesterday it read “for those in search of the lighter side of infertility.” Today its simply “In search of the lighter side of infertility.” It’s a subtle change, but its recognition that I can’t promise anyone levity every day, especially not myself. I can’t always be funny and witty. However I will commit to always being in search of the lighter side. For you and for me.

For many, waiting is a as much a part of trying to conceive as sex. When sex is removed from the equation for the couple trying to conceive through IVF, waiting becomes the single most frequent conception act. Waiting, just like its more provocative cousin, can come in many flavors and is done throughout the IVF odyssey.

The big waits are obvious. The most mammoth is the wait between the time the embryo is transferred and the results of the Beta HCG pregnancy test. In our case, this wait spans nine intolerably long days. Time moves very slowly over the course of what is commonly called the two week wait. I’ve often heard women say it would be just fine to be unconscious during this time and awoken only after the results are received.

March 13th is the date of our transfer which means on March 22nd we will have the eagerly anticipated results. The date is circled on the calendar. The hope and anxiety are already building.

The torture of the two week wait is followed in magnitude only by the wait a couple experiences between the egg retrieval and the final fertilization report. Money, hope, health, and mental well being are all riding on discovering whether the eggs fertilize and grow to a stage and quality acceptable to transfer and make a baby. Being sadistic people by nature, we chose to extend this period at our new clinic by throwing a little genetic testing into the mix. The time it took from retrieval to receiving the call that we had genetically normal embryos to transfer extended over 3 weeks.

Waiting for the genetic results is further broken down into waits that are much smaller. We experienced almost immediate gratification after retrieval and waited only two hours to learn that 22 eggs were retrieved successfully. The clinic then called 24 hours later to tell us that 12 of those eggs were mature and 11 fertilized. These were minuscule intervals in comparison to what came next. For the next six days we patiently but eagerly waited to be told that 5 of those embryos made it to the blastocyst stage and were good enough quality to be genetically tested. Next we waited two and a half weeks to learn we had two genetically normal embryos and two that needed to be retested, therefore requiring yet another two week wait. Our embryos were on my mind every spare moment during this time. Ultimately we ended up with three genetically normal embryos. Our last is the one we will transfer in March.

The longest wait of all was this summer and fall while we waited to work through a long process at our clinic that would culminate in our embryo transfer just last month. We first called in June and were able to meet with our new doctor in July. This was followed by another month long wait to get on the calendar to visit the clinic for our work-up to make sure we had a green light to begin our cycle. By November my ovaries were finally percolating and we flew back to our clinic again for egg retrieval surgery. After retrieval the wait was another two months as we completed testing on the embryos. In the months preceding retrieval we used the time to get our eggs and sperm ready to do their life’s work. We each took different supplements, limited alcohol, exercised moderately and ate healthy. At my peak I was taking 19 different supplements a day and Bill took 11. At least it helped us pass the time.

Tiny little waiting periods pepper the whole IVF process. Since our failed cycle back in January I have waited three days to get my period, three more days to start birth control, another 13 days to start lupron, and five more days to once again stop the pill. Each step takes us a little bit closer to our fate, whatever it may be. Though small in terms of actual time, these steps feel gigantic. When they come early, it can be unequivocally thrilling. And that is what happened today.

If you read a Deeply Disturbing Fascination with Toilet Paper you know a little bit about the waiting for that happens for a woman who is getting ready to start a frozen embryo transfer or other cycle. Since Saturday I have been a devoted student of TP. Today I hit pay dirt and was able to call my clinic to check off a critical step that will take us to transfer. Two days from now I will begin estrogen patches that will prime my uterine lining. I continue administering lupron daily but cut the dosage which should help with the headaches and other symptoms. Sadly the bitchiness caused by lupron will only be replaced by the emotionality of estrogen. The end result for me is about the same. Say a little prayer for Bill who catches the worst of the mood swings.

My call to the clinic today was a full day earlier than we all expected. However, no changes will be made to the transfer date. The lupron I am injecting keeps my reproductive system suppressed and on schedule. The extra day may only serve to give my lining just a tad bit of extra thickness to welcome our embryo home. A nice, thick, cozy lining should help that embryo want to stay for the long haul. With a little luck we will then be waiting for doubling HCG levels, morning sickness to pass, a myriad of ultrasounds, and ultimately a scheduled C-section date.

Even though meeting today’s milestone early will have no impact on when we actually get pregnant, it is a rare event to have something, anything come early. I’ll take it.